I wish they'd take me seriously.

Hello Everyone!

I was diagnosed with Sjogren's accidentally while looking for lupus. I have antibodies, dry mouth, dry skin, and dry eyes. I am not taking any medication for it, but was rather told 'it's not that serious' and just make sure to treat your symptoms.

I have seen 3 rhematologists since diagnosis, and all of them agree that I did not need to treat since my symptoms were not severe although my bloodwork suggested otherwise.

I've had two children since diagnosis, and now also struggle with digestive problems, sun sensitivity, short term memory loss, brain fog, fatigue, headaches and severe anxiety. I see a naturopath, and they responded with a large collection of vitamins to reduce muscle spasms, increase tear duct performance, improve thyroid function (I have hashimotos too) and increase energy.

Since my late 20's I have felt like I am constantly ill.. not like a cold.. just a malaise, but even with a diagnosis of sjogrens I feel like people do not take it seriously and say I need to eat more or get more exercise..

Anyways, that's me and my rant.

Hi OliviaJ -so sorry to hear that noone is taking you seriously.  I would agree with Lynwood to see a rheumatologist again.  I have sjogrens and was treated initially with a burst and taper of prednisone to try to get symptoms under control and then plaquenil daily twice. 

It took me years of being sick, changes in drs and finally in January of this year being diagnosed and starting treatment.

Unfortunately you have to be your own advocate and be somewhat assertive if you feel you need treatment/medications.

I would also agree that you should talk with the rheumy about lupus - both lupus and sjogrens are serious and can be quite serious with organ involvement.  If you can start some type of treatment sometimes it slows progression of the disease(s).

Hang in there. 

Sending positive thoughts and prayers your way.

Olivia,
I was diagnosed with Sjögren's looking for RA and now I have all three, RA , lupus and Sjö. Everyone is right, you need to be your own advocate and take control. Your doctor is not going to call you out of the blue and say , oh golly ma'am I'm sure sorry lets get you into some meds I was wrong!

Go to your regular doctor, bring a journal of your pain, tears, strife, and struggles....hold NOTHING back. The only reason I got what I really needed from my doctors was because I was honest with them. They cannot see you are sick, you have to show them.

Please take this as me trying to help you and telling you straight. I have waisted so many years and years waiting for doctors to see the pain under the surface. We are tasked with an added hardship, in addition to being undeniably sick we need to prove it and sometimes we feel odd complaining about the wounds only we can see and feel.

This does not mean we do not feel them or deserve help. Go to your regular doctor with your journal and your concerns and get a new referral. Start a new relationship with a new rheumy.

Good luck
Lolokonoki